Hello Vee,

Happy New Year! Thank you for joining our little conversation. It is lovely to hear that our conversation is enjoyed by someone else. As you have read from the start, you will know that we started our cancer journey at a similar time, and we know we were lucky to have been treated before the dreaded lurgy invaded our shores.

I feel for you having to wait so long for action. You are at the worst stage of all, mentally. Waiting for information and action is the scariest time of all, I remember it well, even though I was a bit too blasé about it for my children. I am so glad you have felt more relaxed about things by following our experiences.  I have had it the easiest of our trio, that's the benefit of age, I think. Being told that chemo wasn't likely to do me much good because of my age and I didn't need rads because I had the mastectomy was the best news ever. Still being left with a dangly boob isn't so good, but my kids have made me promise on pain of permanent imprisonment that I won't go for another mastectomy. "Don't put us through it again!" Put THEM through it! Sheesh!
 
Like you, I found a stream to follow by a lovely lady who wrote on here a daily blog, and she has been searingly honest about her daily life, too.  She has a husband with terminal cancer and she has logged her daily trials and tribulations with humour and honesty that made me feel it was a friend telling me her story.  Alas, it sounds as though her journey may be near the end as her husband is very unwell, in hospital, now.

I think it is normal that the frequency of posting on here becomes less the further away we are from the thing that brought us here in the first place. We are the lucky ones who have been given respite from the constant thoughts of what, when, how about cancer and can start thinking about living a normal life.  There are some lovely people, on here, who kindly respond to new people posting to put them at ease, somewhat,  and, occasionally, I will look at 'newly diagnosed' messages and respond if I feel I can help but as life has returned to normal I forget to log in and just come on when I get an email to say someone has responded to the not so new member of the family! I suspect that is also why Caroline and Sam don't come on as frequently, they have even more going on in their lives than an old Sheltie lady. 
I will be delighted to hear from you if you care to join our little team and will always reply. It may not be an immediate reply like this one, but I will get round to it within a day or so.

i really hope you get your action plan on the 14th, it's amazing how that helps. I wouldn't expect too much support from your husband, as he is probably going through his own kind of hell and learning about your cancer is more than he can cope with. He's only a man, after all!  I hope he's on a waiting list for a transplant, when life gets back to some kind of normal. 
 

Good luck for the 14th, and beyond. We're here for you to moan, whinge or shout at if it helps you get through it.

love,

Christine xxx

Hi Christine,

Thank you for your prompt reply. 

Aww, of course I'd like to join your happy team. Your family makes me smile. They mean well, but forget their compos mentis mother can't possibly know what she wants. Mine are the same, where I end up saying to them " So what am I? 5?". 

I've read in a few of your posts that you talk of your age, where you state if you were 20 yrs younger, you would have that implant/reconstruction? What have you (not your kids! Lol) decided on? I am not scared of losing a breast, as they are pendulous (my consultants words) and have been the bane of my adult life (58 yrs). I have always wanted a reduction, but could never afford/justify spending the amount of money required just to make me feel good physically. I did start saving, but something more important was needed, and I'd have to dip in my 'boob fund', knocking me back, making my goal further out of reach.

It's good now that I no longer have to save, but its a shame when I look at the circumstances why I no longer have to save. Is this where the saying (be careful to what you wish for) comes from?

I have decided I would like to have a diep flap immediately after my mastectomy and sort the other breast at the same time, if possbile. I did ask for a double mastectomy, as I couldn't face going through all scans, biopsies, dreaded waiting times etc....if I anything sinister appeared in the other boob, but as there is nothing to suggest I would get it again, they told me they are reluctant to remove a healthy breast.

Well I've gone on long enough....don't want to to scare you off!

Much love xx :love:

Vee x

Hi Vee,

It was lovely to read that our conversations have helped you. I suppose we forget that our thread is available for many to dip into and read! Like Christine said, we all met on here in the summer of 2019, when we all started our journeys with breast cancer. We all had different journeys but it was lovely to know you could chat about your fears etc with people who could understand. 
I suppose now we are further down the line and back into "normal life" again, we don't tend to need each other so much, but just catch up every now and again. I found that friends and family are amazing and really do want to offer you support but don't truly understand what you are going through. You are now at the beginning of your journey - a scary, worrying time. Appointments/results/ops - it will feel like you are on a merry go round that you want to get off but you will put your head down, your super woman pants on and get on with it. The hardest part, I found was afterwards. When everything went quiet. No more appointments/results. Just left to get on. Then you process your journey and that for me, was the worse part. But use us to support you! We can offer any words of wisdom :wink: - possibly! But we can offer support.

Keep us informed!! Now I must go to bed - have a son off back to uni in the US tomorrow and we are still fussing about at 12:50pm!! 
Caroline xx

Hi Vee,

I see you have had a reply from Caroline, who can give you advice that I can't, as I got off lightly with just a mastectomy and lymph node clearance, plus I'm retired and I live alone, except for Archie, so don't have a job to think about or a family to to feed and care for on a daily basis. You need to hear from Superwoman Sam, who has gone through the whole gamut of pre-surgical chemo, and the whole reconstruction thing and still makes us laugh when she tells us about it.
I, like you, asked - make that begged, pleaded, and cajoled - to be given a double mastectomy because being left with one pendulous ( your doc's word) and ample ( my doc's word) breast is worse than having none.  I was told the same thing you were, but I was also told that if I had counselling I would be able to get the second boob removed after a few months.  By the time the few months had passed, apart from my daughters horror at the thought of it, I decided not to bother. My dangly boob can stay. It has affected the way I dress, though.  I had some seroma after my surgery and the tissue around my very long scar still feels quite tight so I only bother to wear a bra if I am going out and don't want anyone to feel embarrassed by my one sided look. I wear a close stretchy vest with bra like cups and stick my soft prosthesis inside the empty cup. If I really want to wear something nice for going out, although that hasn't happened often in the last 2 years, I wear my silicone prosthesis. This gives a better shape and fits better inside a bra. The soft ones ride up and need to be pinned into place!  Sometimes I still see it peeping above my vest! At my first mammogram there were some micro calcifications visible in remaining boob so I had to go through the biopsy under mammogram procedure. That was unpleasant, I felt like I was being stapled to a desk by my boob. After doing that twice they weren't able to actually get a piece of tissue with a calcification to examine, so they decided to leave me alone.  I wished then that I'd gone for the second mastectomy a few months after the first but I'm resigned to things now. Tony can stay! (Tony named by my friend as it's "t'ony one"

i hope we hear from Sam soon, but she has a lot going on at the moment, so I'm just keeping  my fingers crossed that all is ok with her.

Let us know how you go on on the 14th and don't get too freaked out by everything in the meantime.  Hopefully in two year's time you will be sitting writing to some woman who has just been diagnosed and needs your kind words to feel better about things.

lots of love

Christine xxx

Hello Christine,

Hope this post finds you well.

Ahhh yes the second of the three musketeers contacted me. Just waiting for our third, Superwoman Sam! I'm sure she will be in touch when she is ready. I'm like, take your time Sam, but hurry up! (Joking).

With re to removing my healthy breast, I'm taking that I will be offered counselling? I can only think  the reason for this is the medical profession requires it so (where there's a blame there's a claim, people) can't sue their a**** further down the line? They making sure that individuals wanting/insisting on having any healthy body part removed, has the capacity to cope after the dotted line is signed.

I had started experiencing sharp stabbing pains in my defected boob around mid Dec. I called my BCN who told me everything will be magnified now I know I have BC, and that I will think every twinge/pain is where the cancer is spreading.

I haven't contacted my BCN since then as I don't want her to render me one of those (uh oh, we got another one ere) patients. Since then, the boob where the tumor is, feels warm, whereas the rest of boob is cool. Not sure what's going on there?

Im trying my hardest (and it is very trying...I'm sure you know) not to get too freaked out, but I swear Christine, all this is testing my super everlasting patience and turning me into a miserable breastzilla bird!! :laugh:

Caroline,

It is indeed a very challenging time. 

I've tried on the Superwoman pants so many times since my diagnosis, and have taken them back off again as they not working for me. Oh I'm not giving in, I will approach them again when I start my treatment and can begin to relax. I know I will have chemo (not nice I hear) and surgery, so I will need my pants firmly in place for this time.

I hope your son had no delays, got his flight on time and had a safe journey. 

Much love xx :love:

Hello all

I'm alive!!  One LONG message for all.....

I should get the formalities out of them year despite being very late to the party…Happy New Year, not really a huge fan (overly commercialised celebration of the 1st of the month…bah humbug!).  But a big (and again delayed!!) Happy Birthday Christine, 75 is impressive, hope you had good celebrations and were festooned with fab pressies (no masks, lateral flow kits etc.)

Operation went well but took it out of me (in many ways more than the first), not being able to walk was a real set-back, my thighs looked like they’d been in a collision with a bus and were really painful (never seen bruises like it), getting better now and now have ‘normal’ looking bruises, thankfully able to walk fine now which is helping lots.  Christmas really quiet, was well fed at Adrians friends (very good cooks) and had a nice time despite being incapacitated.  Was so glad to be able to stuff my face this year (last year newly reduced stomach nearly popped).

I’m glad to say I did however manage to take down all my Christmas decorations before twelfth night (any later and I could disappear into a post Christmas/apocalyptic black hole I believe).

Other than that all quite dull here, avoiding that blummin’ covid well and soon will be on my last zolodex (blood test needs to confirm if ovaries are sufficiently withered).  So one less thing to contend with, hurrah!

My father is now bed bound and sleeping for all but an hour, he is having one issue after another so think its nearing the end, hope so for his sake.  Hoping to go up north to see him when I can.

Glad all are doing well cancer-wise, hopefully 2022 another clear year, they rack up quickly…thankfully!

Christine - glad your legs/letrozole issue got sorted, yep the sweats are a pain aren’t they, I find its better when I’m exercising and really noticed them again whilst convalescing.  

So sorry about Smudge, hate it when animals are in pain/die (and given he was ill am glad his illness wasn’t more drawn out)…but their living more than makes up for the tears, hope the new puppy is helping her (and you/Archie) get over the loss, am sure he’s keeping everyone on their toes!  Hope your daughter is copping ok with her chest and glad she’s feeling better(am sure Bobbin is helping!!).  I grew up surrounded by poodles, we had one of every size but only black & white (cheaper license for tight northerners!)…love them and they’re bonkersness!

I love that Bobbin & Archie are good together, your sleeping arrangements sound great, I usually have at least two furry idiots on my bed pinning me to one position, quite difficult to shift them given their size and my painful areas!  Am sure they’re ‘helping’..mmm.

I’m on my new iPad here, hope you’re enjoying yours, I’m sure I only use about 10% of its functionality….ah me and my Luddite tendencies.

Caroline - robot hoover eh? Not sure me or the cats could cope with that level of tech, plus it would probably need emptying every day with all the cats hair round here (or does it empty itself?? Now that would be  both clever and somewhat worrying at the same time), glad your Christmas was good and your presents useful (sad but I am also a fan of practical presents…a sign of age I think!), I got some lever arch files & clippits (thrilling eh?) amongst other stuff.

Pandy - hope your Christmas tree survived, mine & the cats all survived, think they’re too old and fat to consider scaling the tree now thankfully.

Vee- hi, good to hear from you (despite it being cancer related, of course), am glad that our chats show that a good, happy life awaits post surgery/treatments…which it does! It’s funny though that very soon after recovery from cancer your ‘normal life gets in the way of doing the stuff that you have time to do during treatment (with lots of time on your hands), plus coming onto this site was initially for support and information which I certainly don’t really need now, having gone through it all.  I am really glad Christine’s thread is of use to others- who ever thought my blabbering on would actually serve a good purpose eh?  Must tell the boyfriend!

As usual Christine is a lot more eloquent than me in addressing your queries (she does have years on me though!! Much more experienced at such matters I like to think).  And I too hope that the 14th happens, I do feel for those going through cancer stuff now, selfishly makes me glad I dealt with the treatment side pretty much pre-COVID, its just another blummin’ challenge that you really don’t need in your life.

And I’d certainly recommend, given what you outline re your current boobs, a DIEP, I’m 52, not far behind you…there are some quite lengthy NHS  waiting lists though ( I was lucky enough to have private insurance through work).  Happy to answer any questions you may have as am the DIEP expert now!  Worth adding that I was quite happy with just one boob, but am now happier with 2! And had (as you’ve no doubt read in the thread) quite a good time (sounds odd, but true) on treatments compared to many. As I put on weight pre op to ensure there was enough fat to be liposucked and am still swollen my new boobs are certainly impressive (nice rack - as my sister tells me!) despite the new nipple still being encased in a ‘donut’ (even more impressive eh?  I won’t explain, it will take all the fun away….

I did also want both boobs removing (more for symmetry than the fact I was worried re cancer in the other…am not a big worrier when it comes to cancer) but was told I’d have to wait (surgeon was not a fan of my request at all), and to be fair am glad I only had one side removed/DIEPed as it would have made recovery from mx and DIEP so much harder (I had one good working arm throughout that was a real bonus).  There are quite a lot of ladies who do manage to get a healthy boob removed at the same time so worth progressing I reckon.  And do contact your BCN when you need to, they are used to many calls and am sure they would rather (as would I!) you called as something may need addressing.

Love that we still have this thread and that it helps others!!!

Superwoman  (well I will be once am back on the bike/to the gym!!) Sam XX

Hi Cazrosie - I am currently being offered a lumpectomy (assume same as partial mastectomy) or a mastectomy + reconstruction for a 3.5cm globular tumour. With the lumpectomy they indicated I would go from a B to an A cupsize so offered me a breast reduction on the good side. Size is important to me so I would rather go for a reconstruction to get symetry and also avoid touching the good breast? Are you happy to tell me about your situation? Did you have the same type of cancer? How much of the breast did they have to take? What type of reconstruction did you have (via liposuction or LIDAP)? Di they do the reconstruction at the same time or later after radiotherapy? I am sorry your margins were not clear - did you go for a further lumpectomy? - they suggested that this may well be the case with me due to the globular cancer type that I have. Were you - are you happy with your results? I do hope all went well with you after this post - best wishes Karen

Hi Karen,

Firstly I'm sorry you have joined this club but hopefully the support you can get from this group will help. So I also had a 3.5cm lobular tumour. My boobs were only a B cup too, so not huge. I would say my reconstructed boob is smaller but think it's only really me that notices. Boob tubes are harder to wear these days as tend to fall down on the smaller side :laugh:

I would say they took away a third of my breast in surgery, then used a LIDAP at the time of the surgery to reconstruct. I managed to keep my nipple.  I do have a huge scar and at the time looked like I'd been in a fight with a shark but it has faded really well and I'm actually really proud of my scar. It runs from under my boob, around my side and onto my back. When my margins weren't clear, it was along the bottom section so they just took the remaining breast tissue away, in that area, in another op. I was never in over night and recovered pretty quickly.

2 years down the line, my scar has faded, my breast is not the same shape as it ever was but I'm not that worried. It does have numb areas and you get the sensation of pins and needles when you press it and tingles in your back area! I do have to ask them to be more gentle on that side when I go for my mammograms. But I'm still alive and as far as I am aware, I am now cancer free! So I am grateful for that and can live with a slightly odd shaped breast! Feel free to message me if you want to chat more

Caroline x

Hi Carosie - thanks for your reply - so glad you are happy with your result. I don't know if I am a bit de- sensitised - I haven't felt that I am likely to die - so I guess I have been quite focused on getting the most pleasing visual outcome - over the number of ops/duraction to achieve it. Interesting that you had a lumpectomy with plastic surgery - I was not offered this option - and was told that it wasn't possible - it's not until I read literature that I realised it was - and that I think it is just not available at my centre. I have asked for a 2nd opinion at a different centre that does both - so I get fuller info? do you know of any reasons why someone would not qualify for this? Did you consider having lipofilling rather than LIDAP? If not was this because of how much you had to have removed? Interesting that you had plastic surgery at time of lumpectomy - I wondered whether this would be delayed due to needing radiotherapy and that radiotherapy can shrink your tissues - not sure if they over compensate on size to allow for shrinking? Did you have radiotherapy? If so did you get shrinkage? Also did you get any appearances/colour changes in skin or tissue? do you always get a scar with LIDAP - or does it depend on how much they take? Do you ever wish you had taken a different path. So kind of you to offer your info - I am very grateful - best wishes Karen